Mast Cell Dermatology Appointment today with full flare visible! I am a very rare patient 😲 couldn’t Of asked for a nicer doctor

[Lisalou19]

I thought my appointment was a routine dermatology appointment as that is what I am used too. But this one was very different indeed and I was referred to him by Rheumatologist who between them will now share my care 😊

I was in full flare and the doctor spent ages looking at my skin. I showed him photos of my death hands (my nick name for grey tone). He confirmed this was consistent with Raynauds.

Showed him the photos of my skin after being in contact with water. At this point he compared my legs today against the photo, his opinion is that this is not an allergy but more that my body is struggling to get my blood to circulate to my skin and the heat from water is manipulating the flow of blood to the areas I am struggling with. 100% makes sense to me as the water rash only shows on the areas I get my normal skin complaints. He said this will need a separate medication.

He also commented on the fact that my skin is extremely dry, to the point it cracks . I was meant to grab a prescription today for this but I forgot 🙄

Due to the activity that was visible today he requested skin biopsy, to which this was declined, no one to do it. He rang another department they also declined. This very caring doctor then said to me “you’ve been here there and everywhere and I have you here today so if you could please wait I will do them myself at the end of my clinic”. I had a biopsy taken from my forearm where I am starting to produce strange scaly areas and one taken from my chest where I produce a red rash.

Now I may not get the answer even still, but the fact I now have two specialists who believe in me makes me feel like I’m winning this battle. I can slowly feel that from now on I will no longer drown in self doubt or anxiety in case the doctors think I’m a nuttah .

Someone I can’t remember who mentioned I should have my own name for my illness 😂. I think I will go for “everything and anything autoimmune disease” 😂😂😂

For any of you who are facing the long diagnosis battle, please keep on your fight, because without you believing in you, you will never get someone else to believe in you 😉

We are all unique in our own ways, but one thing I can honestly say we all share, is kind caring open hearts ♥️ because we know what it feels like to experience these mind boggling body dysfunctions. Xxx

[PMRpro]

No - Lisalou disorder/syndrome was what I would have said!!!!

But this guy sounds worth going to see.

[Lupiknits in reply to PMRpro]

Sounds like the title to a song! I’m glad you’ve found a good ‘un and are making progress Lisalou x

[Lisalou19 in reply to PMRpro]

I’m so taking him a box of chocolates next time. He sets the standard of how doctors should treat patients x

[PMRpro in reply to Lisalou19]

Mind and tell him - they blossom under a bit of positive feedback.

[KayHimm]

Oh, Lisa, I know these doctors know you are sick. You have just had such a long and difficult road to diagnosis. I am so glad you mentioned this water reaction, and it sounds like this excellent dermatologist was able to figure out what is happening. You are a real challenge but it sounds like you have some very good specialists on your side. Hope you move forward and start feeling better soon! K

[Lisalou19 in reply to KayHimm]

My mum said I was challenging as a teenager 😂😂😂😂. I haven’t changed much 😅x

[PMRpro in reply to Lisalou19]

Start the way you mean to go on I say!

[Melba1]

So pleased you’ve found a fantastic doctor after the awful journey you’ve had. What a lovely chap he sounds - definitely deserves chocolates 🙂 Now to get fully to the bottom of your rarity and get you sorted - getting much closer it seems. So very pleased xx

[Lisalou19 in reply to Melba1]

It’s a strange feeling, when doctors agree that your not well. You don’t want to be ill of course but there’s some contentment knowing these doctors believe x

[Melba1 in reply to Lisalou19]

Definitely xx

[Boudica1]

At last a great doctor and a fantastic appointment. Makes it all the more important to keep pushing for answers.

So glad for you and well done for telling and showing and not leaving out anything.

Proud of you.

X

[Lisalou19 in reply to Boudica1]

Thank you and thank you for your advice. I do definitely need and appreciate the guidance received

Xxx

[Lisalou19]

I under Guys Hospital. This is is the same hospital I have attended many times during my battle. Clearly some doctors are more empathetic to patients and also strive to gain further knowledge.

X

[Krazykat26]

Isn't it great when appts coincide with full flare? It happened to me last year n my dermy looked at me in a whole new light..he's been fab ever since!!

I'm so pleased for u..I for one will be watching your posts so please keep us informed on your progress 😽xx

[KayHimm in reply to Krazykat26]

Agree. And those serious medical dermatologists can really add to the care and diagnostic picture of those of us with autoimmune disease. I had that experience years ago with one who was the director of dermatology at a rheumatology service. They can diagnose a lot from looking at our outer layers! K

[Lisalou19 in reply to KayHimm]

I had so much visual activity he didn’t know where to look! And when he saw my legs he was shocked at how little medication I am currently on. Hopefully medication will be fast forwarded because I’m having more bad days than good. But I’ve got to be honest I feel like a big weight has been lifted. At my rheumatologist appointments at guys they have only seen my nasal sores, crusting and skin rash on my chest, so this visit was pretty much icing on the cake. The one thing he said which I’ve never heard is “just looking at you I can tell your very unwell” It’s not what most people like to hear, but in this battle it’s well overdue words I kind of needed to hear.

X

[KayHimm in reply to Lisalou19]

Haha. Yes, visual activity is right. The skin can be sort of a window to what is happening internally at times. Your rheumatologist trusts this doctor or he would not have sent you to him. You have needed validation. You may have been stubbornly testing negative on blood tests for too long. But your skin is telling a story! Your determination and courage is paying off. K

[Lisalou19 in reply to KayHimm]

I definitely my bloods are being stubborn, my dad has the same issue. Although he did mention crp was high on one round of tests and rheumatoid factor. I do have anti bodies for Myositis and scleroderma but this doctor didn’t think my rashes and skin presentations were a picture of either these but not ruled out because of my being rare. This doctor was definitely interested in me , not had a man show any interest in a long time 😂 x

[eekt in reply to Lisalou19]

😂 A caring, knowledgeable doctor makes all the difference...so glad you're on the way to a proper treatment plan Lisalou! xxx